Jackson Day 16

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Jackson NICU Day 16 (03.0912)

Today my bosses invited Chris and I to lunch with my work team. We had an amazing sushi lunch with them before heading to the hospital. So we didn't arrive at Children's until 2 pm today. On our way Nurse Mousy (who we figured out is actually a D.O, so I guess it's Doctor Mousy) called and left me a message call her back for Jackson's daily update.

When we arrived we had our nurse, Lisa, page her. Doctor Mousy arrived about 20 minutes later. We've started to come around to Doctor Mousy. She's been very compassionate to us the last two days and sat with us for another 20 minutes to explain Jackson's plan today.

The very worst news we received today is Jackson will be at Children's for at least another week. I was ready to break down as soon as she said that but the rest of the plan I'm very on board with. Doctor Mousy cannot figure out why Jackson's sugars keep crashing. His pituitary gland test (ACTH Stimulation Test) came back normal. She said that Endocrinology thinks it may or may not be the Propranolol that he is on for the SVT. Doctor Mousy spoke with Cardiology and together they decided to take Jackson off the Propranolol completely but they need to monitor him for a week before releasing him.

The plan with Jackson's glucose was to increase his Dextrose rate up to 5 and add Diazoxide 3 times a day. This should stabilize his sugar and then tomorrow they will start to decrease his Dextrose and Diazoxide. We will potentially go home on the Diazoxide if they can't wean him off of that but we can keep followed up with Jackson's pediatrician on this medicine.

Jackson was really alert today. I just love sitting there and talking to him about the future. He'll just sit and listen. The only bad thing about this was is he was awake the whole time we were there minus an hour when he fell asleep (see picture above). Today we left at 7:30 pm so our baby boy was so sleepy and fighting it so hard. I just couldn't leave until he fell asleep so I finally put him back in his crib and just rubbed his ears until he fell asleep.

Jackson is modeling some Baby Gap sweats and a Gerber kimono shirt

As upset as I am that we have to spend another week at Children's, I know he is in the best place to make sure that he has no more SVT's and that his sugars stable. I miss my boy so much. Maybe if I start a count down, he might actually come home on Friday?